Distance Caregivers For Advanced Cancer Patients Have Special Needs

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By 2012, an estimated 14 million people will serve as distance caregivers to
family members who live across the state, across the region, even across the

“No longer are families living just around the corner from each
other,” says Polly Mazanec, an assistant professor at the Frances Payne Bolton
School of Nursing and an advance practice oncology nurse at University Hospitals
Case Medical Center’s Seidman Cancer Center.

The distance presents a
challenge as family members work to gain information about their loved ones and
participate in their cancer care. But it’s also challenging to the
local caregivers nurses, doctors and local family members who must adapt
short-term to these remote caregivers’ special needs. In hospitals across the
country, such challenges have prompted distance caregivers to be labeled
“seagulls” and “pigeons” references to family members who fly in, make a mess
and fly out.

Distance caregivers are gaining in numbers, according to
Mazanec, who is lead investigator on the study, “Distance Caregiving a Parent
with Advanced Cancer.” In the Oncology Nursing Forum article, “Lack of
Communication and Control: Experience of Distance Caregivers of Patients,” she
reports on the qualitative findings from the study.

Mazanec says what she
and her fellow researchers found requires a change in the way information is
delivered to distance caregivers. Nurses, she says, can have a role in easing
some of the emotional stress experienced by distant family

The majority of the distance caregivers are secondary caregivers
with local family members relaying patient information secondhand and often by
phone, Mazanec says.

With sparse how-to information available to help
these individuals, Mazanec first wanted to understand what bothered these
caregivers and then develop an intervention to bring them into the loop of
patient care.

The study, part of a larger look at distance caregiving,
involved telephone interviews with caregivers for patients with advanced lung,
gastrointestinal and gynecologic malignancies. Each interviewee lived 100 miles
or more away from their family member and answered three open-ended questions
that were taped and later transcribed.

Common themes were a lack of
control and information, but what emerged beyond those key concerns were the

— Distance caregivers struggle emotionally about the right
time to visit or call their family members. Many caregivers have families with
young children and possibly limited financial means to travel.

Uncertainty about what was happening with their family members also concerned
the caregivers.

— Even though the caregivers were highly educated and
many sought information online, they still wanted more information from the
health care professionals.

— Even though parents of these caregivers
were ill, they still wanted to protect their children by withholding information
that sons and daughters wanted to know. Likewise the children withheld
information to protect or lessen the stress of their ill parent.

Caregivers felt it was important to stay connected.

Mazanec says that
with new technologies available, she hopes to design a program that closes the
distance gap.

Collaborating on the article were: Barbara Daly, the Oliva
Perkins Professor in Oncology; Maryjo Prince-Paul, assistant professor, at the
Frances Payne Bolton School of Nursing; and Betty Rolling Ferrell, research
scientist at the City of Hope National Medical Center in Duarte,

The study had funding from a National Research Service Award from
the National Institute of Health.

Source: Case Western Reserve University

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